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I seem to be lurching from pillar to post, Oxygen compressors advice

mikefa profile image
11 Replies

Here I am a physical and mental wreck but lucky in that I have many positives remaining.I was diagnosed 14 years ago with COPD and this has remained in the background until 2022. I used the briatus 10mg inhalers each morning,took gaviscon for re-flux for a Hiatus hernia. Briefly my other concerns are a prostate cancer, lucky watch and wait. Meniere's Disease deaf in on ear ,partial in the other plus 24/7 tinnitus. A colon cancer repair all ok I hope, no scans because of covid .Skin cancer (waiting for surgery) and on the waiting list for heart failure clinic.

So what's all the fuss over COPD I hear you say.. Well my mobility has suddenly dropped I am now out of breath walking from room to room and the stairs requires a stop and 5 minutes recovery.I have been prescribed Spiolto Respimat and after approximately 1 week I was having suicidal thoughts and psychotic episodes and more than usual balance problems..throughout my oxygen levels have varied between 8.9 to 9.4.. I have off my own bat to go back to Braitus until I can see my nurse.

When I have mentioned oxygen compression my nurse says not advised by NHS.. There is a lot of information advising re its use for COPD so I bought a Grundig BE04 Series compressor.. I have had it a week now and have only tested it is working as there are no guidance re safety or dosage.

I am waiting for a response from my GP and or nurse..

Sny suggestions or advice will be welcomed..

11 Replies
Patk1 profile image

Ru perhaps reacting to change in medications?

CDPO16 profile image

Oxygen is a prescribed medication just like other prescribed meds. It shouldn't be used without a full assessment by specialist nurses and to use it without that can be dangerous. Your nurse isn't giving you accurate information but I wonder if she means that oxygen levels between 89 and 94 are quite acceptable for people with COPD and do not indicate a need for oxygen therapy.

It does seem that the Spiolto doesn't agree with you. Why was it changed to that instead of your Braltus? It isn't unusual for people to react to different inhalers but the only way to know is to try them.

Aside from this, you have a lot of problems beside your lung disease and I hope you get that stable again soon.

JJ_7 profile image

Gosh Mikefa you are going through a challenging time. It has been suggested by nurses and doctors that I start oxygen therapy but I am holding off for as long as I am able. Feelings of hopelessness and depression is a natural reaction to a bad health situation and adverse circumstances. I would discuss these feelings with a medical professional as there may be some help available. There are times that I feel like just giving up and I think these feelings are natural. Just by picking up the phone to make an appointment with your GP is a step on the road to feeling better. Do it! Wishing you good health and a good 2023 xxx

bogo3995 profile image
bogo3995 in reply to JJ_7

I don't understand why people are adverse to using oxygen. I was diagnosed 17 years ago and my PCP immediately prescribed oxygen. I use oxygen during the night and if I take a nap during the day. I feel it has saved my life. The only inhaler I use daily is Trelegy. I do have a rescue inhaler but have only needed it 3 times. I have only had one flare-up in 17 years. I visit my pulmonary office yearly and my spirometry test has not changed. Please don't fear use of oxygen.... emphysema has not slowed me down unless I go to an altitude of 11,000 feet or higher. My prayers are with you.

mikefa profile image
mikefa in reply to bogo3995

Many thanks for your enlightening rply. How many hours per day and what settings do you use on the compressor,

bogo3995 profile image
bogo3995 in reply to mikefa

My pulmonary physician told me to use 3.5 ltrs during the night. My concentrator does not have half increments, so I use 4.0 ltrs. I only use my oxy during the night (I sleep approx. 7-8 hrs/night and if I take a nap in the afternoon approx 1 hr). Please talk to your medical team about using oxygen. I see SO many people that say they "dread the day they are put on oxygen"....my heart goes out to them. I truly feel it has saved my life.

Alberta56 profile image

i can't advise on medical matters, but I wish you well in dealing with your multiple problems. xx

Tia4209 profile image

As your COPD has been so well controlled for many years snd has suddenly changed, it might be a good idea to ask your GP if you need your heart checking. Also if your oxygen levels are dropping under 90 when walking but recover on sitting you could request to be assessed for Ambulatory Oxygen. I hope the nurse or your GP can see you soon to discuss why the sudden deterioration has happened etc. Hopefully if the worsening of your symptoms was caused by the change in inhaler then going back to your old one will have a positive effect. Hope your GP or the Respiratory nurse are helpful and your symptoms are more controlled again soon.

PaulineHM profile image
PaulineHM in reply to Tia4209

Really sound advice and this person has mentioned that they are waiting for the heart failure clinic….so perhaps that is the issue.

mikefa profile image
mikefa in reply to Tia4209

Many thanks for your advice by coincidence GP sec rang this morning booked a double appt to review heart failure.

Tia4209 profile image
Tia4209 in reply to mikefa

That’s good.

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